Normal follow up times ?

[Riverbird]

Hi,

Have UCTD for some years but recently consultant says now looking more like SLE, with high levels of abnormal blood tests six months ago. Blood tests checked once since then. As you know the disease fluctuates from week to week or even day to day. I was seen in the OPD last week having had three very good weeks, and been almost pain free. (most unusual). Seen for less than 3 minutes by different doctor, asked if I was OK at the moment, and then without further questioning told I was to be seen again in one year. No check blood tests carried out, but maybe not necessary ?? Pleased in a way, in fact so pleased I did not question it, but even two days later the pains were back. Am just wondering if a year is the usual length between appointments for monitoring of this

disease ?

I was put on anti-malarials but they did not agree with me so am on no treatment at the moment of which they are aware.

[Thaddeus]

Hello Riverbird

This is not unusual, if things are under control and you are doing ok. So long as you have access to your doctors if things start to go awry.

My arrangement is for yearly appointments at St. Thomas, but the door is always open and on the few occaisions that a flair has caused real problems I can call and get seen in fairly short order.

But I can understand that you might feel a bit adrift especially as you do not have a solid DX

Shame the anti-malerials didnt suit, a lot of people take a while to get used to them, during whiich time sneezing can be dangerous. but they are worth it if you can tolerate them.

Good luck.

[Purpletop in reply to Thaddeus]

Why is sneezing dangerous, please? I am taking Plaquenil but didn't realise there is such an issue.

[Thaddeus]

Hello Purple.

How can I put this.

During the first few months of taking Plaquenil while your digestive system is getting used to it. Some people have found that any shock movement such as sneezing, coughing or breaking wind, has led to the odd surprise mishap.

[Riverbird]

Thank you very much thaddeus, very helpful.